06/17/2014 02:25 pm ET Updated Aug 17, 2014

A Tick Bite, an Illness and Questionable Diagnostic Tests

By Beth Daley
New England Center for Investigative Reporting

When my 7-year-old daughter found a deer tick on her belly over Memorial Day weekend, she was less upset by the tick than by my reaction.

I pinched the tiny parasite between my fingers and tugged it off. Then I saw another one, no bigger than a poppy seed, crawl across the pale blue sheet spread on a Cape Cod lawn. I yelled for my husband and had him do a once over on me as I searched my daughter for more tiny black dots. That night, I did it again. I checked her nearly hourly the next day.

Why such a strong reaction?

Two years ago, the wife of my husband's cousin committed suicide after struggling with what she came to believe was chronic Lyme disease transmitted by a deer tick. While several tests indicated she did not have Lyme, at least one test said she did.

Andrea was full of life, indefatigable and strong. She rode her bike up Mount Washington, the tallest peak in the Northeast, for fun. She was the epicenter of energy in her world, radiating light to the students she taught in elementary school, to her two children, husband, and a vast network of friends. If there was a party, you wanted her there.

But in late 2010, Andrea got sick. She couldn't remember driving directions to school. Her encyclopedic mind struggled to find common words. She was overwhelmed with fatigue. Diagnosed with Lyme by May 2011, she began taking antibiotics and suddenly felt better. But several months later they seemed to stop working. She tried more antibiotics, but they didn't help and she grew more desperate. In April 2012, she was gone.

As a science journalist, I wanted to learn more. It quickly became clear just how controversial almost every aspect of Lyme is: its diagnosis, treatment and how long the infection can last. Some patients go bankrupt when their insurers don't reimburse for medicine they are certain make them better. Doctors studying Lyme don't like to publicize meetings sometimes, worried about protestors.

As a former staff writer at the Boston Globe, I spent a year digging deeper into Lyme disease. Now, I've written a new story about Lyme tests for the New England Center for Investigative Reporting, where I now work.

Truths are hard to come by. There are thousands of truly sick people who are convinced that they have a chronic form of Lyme.

But many of them receive a diagnosis based on unvalidated tests that have never fully been proven to show they correctly identify the disease. Andrea had used one of these tests. As a result, we still don't know if her Lyme diagnosis was correct. ​

I have decided I don't want to get to the point where I, or anyone in my family needs a test. So I continue my tick checks. And sometimes, I find them.